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Compliant vs. Noncompliant

Discussion in 'Parents of Children with Type 1' started by MomofSweetOne, Aug 3, 2017.

  1. MomofSweetOne

    MomofSweetOne Approved members

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    Do others cringe at these terms? We heard them used in an appointment today, and I cringed. In my opinion, Diabetes - or the beta cells themselves - are the ones that are non-compliant. There are so many factors, and yes, we can learn strategies to better make guesses, but in the end, so much is just guess and check as we weigh all the differ factors and which is impacting more. It just rubbed me really wrong to have such terms bantered about by someone who has not lived with D and its curveballs. Instead of using such useless, judgemental terms, it would be better to focus on the emotions or other variables that could be impacting on control.

    But the same person also informed my daughter (who is "compliant", by the way) that she has to live with this for the rest of her life (really, ya don't think she's figured that out in 7 years?!?) and needs to learn to manage. Somehow she totally missed that my daughter was away from home for two months this summer, without scale or measuring cups, and still managed to bring in an A1C lower than her previous appointment. I'd say she managed amazingly well.

    Sometimes it's hard to believe paid professionals who encounter patients regularly can be so clueless.

    Vent over.
     
  2. joshualevy

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    Yes. Many people do. So much so that it was a topic of discussion at the recent ADA 2017 scientific sessions.
    There was a lot of unhappiness at the compliant/noncompliant terminology as well as "diabetic" vs. "person with diabetes" and several other language issues.

    The Austrialian Diabetes Association had a great six slide summery of where they want things to go:
    https://static.diabetesaustralia.co...alia/f4346fcb-511d-4500-9cd1-8a13068d5260.pdf

    And there was paper a few months ago from some researchers in New York:
    http://clinical.diabetesjournals.org/content/35/1/51

    And Renza had a good summery including some history:
    https://diabetogenic.wordpress.com/2017/06/20/language-at-ada-part-1/

    And here is some more coverage:
    http://www.diabetes.co.uk/news/2017...nguage-around-diabetes-patients-92990188.html
    (Although I find it a little ironic that the tone of the headline aimed at doctors is exactly the tone that doctors are not supposed to use to patients. Seems like a double standard. :)

    Joshua
     
  3. Sprocket

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    Those terms also make me crazy. To label kids as non-compliant is downright harmful.
    We live in a smaller city, but we do have a pediatric diabetes team we see quarterly. So often, the health care professionals say and advise us to do things - ridiculous to a diabetic family that deals with it daily. Not one of them has type 1 (or type 2 for that matter) and they just don't fully understand. They don't see the efforts the kids make (even if they're small at that point in time) to manage daily. One doctor is particularly condemning at our clinic - and the result - my daughter never wanted to go back.
    My daughter is finishing up with highschool, heading to university to get her RN, becoming a diabetic educator and eventually plans to be a Nurse Practitioner in the field. She's motivated to change the thinking and to understand and be empathetic to pediatric patients and their families.
     
  4. Christopher

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    I'm of two minds about this issue. One part of me is very aware of the way I talk about people with illnesses and I always say "a person with xx". I always say my daughter has Type 1 diabetes instead of my daughter is a diabetic. But I know other parents who use the term diabetic and think nothing of it.

    The other part of me thinks sometimes as a society we go a little overboard not trying to offend people and have gotten too "PC" overall. If a child is supposed to check their bg before every meal or are supposed to bolus 20 minutes before eating and they are not doing that, technically they are not being compliant. I really think it is how the term is used and the context of it. There are certain things about this disease that are out of our children's (and our) control and they should never be made to feel bad about those things.
     
  5. dpr

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    "Brittle" is the one that gets me. "Oh is your daughter brittle" NO she's just diabetic. Wtf.
     
  6. joshualevy

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    I would not treat "brittle" like "compliant", "noncompliant", and similar words.

    Brittle is a more confusing case, because people use it in at least three different ways:
    First, there is a "Brittle Diabetes Foundation" (https://www.bdtype1.com/) which holds that Brittle Diabetes is a rare form of type-1 diabetes, which should be diagnosed as a "separate and distinct form of Type 1 diabetes".
    Second, there is (was?) a belief by doctors (generally considered out of date, now) that some people's type-1 diabetes is just much harder to control than others, and these people were often referred to as "brittle". This caused problems if the doctor "gave up" on these patients, or if the patients "gave up" on themselves, and especially if the label from the doctor encouraged the patient to stop trying!
    Third, there is the informal use of brittle to refer to people who have serious high or low episodes more often than common.

    The second and third definitions different also in the sense that the second held that "brittleness" was inherent to the person, a rare symptom of their form of type-1 diabetes. The third was neutral about causes, and just refers to results.

    For myself, my worry about "brittle" is only if it is used as an excuse to stop trying. That's a problem.
    I think everyone is comfortable with the phrase "Your Diabetes May Vary" (as an expression that T1D really is different for different people), and I think most people these days use the term "brittle" as a convenient label for those who have wider swings, and more issues. And I don't think it's a problem to use that label in that way.

    You can read more about the "Brittle Type-1" controversy here:
    http://www.healthline.com/diabetesm...ed-term-or-condition-needing-more-recognition
    http://www.healthline.com/diabetesmine/bitterness-over-brittle-diabetes

    You might also want to read this journal article about a guy who was diagnosed with "brittle" type-1 about 15 years ago.
    It turns out he had been using a broken BG meter for about 10 years!
    http://clinical.diabetesjournals.org/content/20/1/37

    Joshua
     
    Last edited: Aug 6, 2017
  7. DavidN

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    Completely agree. Compliant / non-compliant are horrible terms to throw at someone wrestling with D. Makes it all seem so institutional. "Paying attention" and "not paying attention" accomplishes the same thing and is a bit softer. Agree that we've become too PC sensitive as a society but sometimes a little tact doesn't hurt either.
     
  8. kim5798

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    Agree here as well. My daughter had issues at her first adult endo appointment. PA telling her that they want her a1c to be 6.5 & that "it's easy" to get it there. She asked if he had type 1 himself & when he replied no, she said, oh ok. So you don't know. Over the years one thing my husband and I worked to understand & cope with diabetes was the idea that they can tell us all of these things about how to care for the diabetes & what we should be doing....but if they do not have or deal with diabetes in their household on a daily basis, they simply cannot "get it." After all these years of endo appointments, there are some things that we just nod & say, "ok" at the appointments, but in real life, what the endo says is not how it works so we do things the best way we know how & just deal. Things like them telling us, "you don't need to test overnight" um, really? is that what you would do with your own kid? you wouldn't go 10-12 hours without testing in the daytime, but no tests overnight is fine? um no. Not at our house!
     
  9. wilf

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    Sorry you're having to deal with such an insensitive lout.
     

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